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Capacitação de pais de pessoas com deficiência : Projeto oficinas de pais
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Abstract(s)
Este trabalho pretende dar uma panorâmica das necessidades, competências parentais e redes de apoio dos pais de filhos com deficiência, em Portugal, e perceber quais os processos cognitivos e emocionais ocorridos nas Oficinas de Pais e os impactos da participação neste projeto, centrado na família. Foram efetuados 3 estudos empíricos que trataram os dados recolhidos aos 279 participantes das Oficinas de Pais, entre 2011 e 2012: no estudo 1, os dados dos questionários de caracterização das famílias, de identificação das necessidades dos pais e das redes de apoio, obtidos no início e no final do 1.º nível das Oficinas (GAE), foram analisados com técnicas estatísticas inferenciais; no estudo 2, os dados do questionário sobre competências parentais percebidas, preenchido por 54 pais, no início do 2.º nível das Oficinas (COR), e do questionário de auto-percepção da evolução dessas competências, preenchido no final do COR, foram analisados com técnicas estatísticas descritivas, e; no estudo 3, os conteúdos de 25 entrevistas presenciais foram analisados qualitativamente com vista à compreensão dos processos ocorridos, da adequação e dos impactos do projeto.
Quanto às necessidades de apoio, considerando a amostra global, os pais raramente necessitam de ajuda para explicar o problema do filho e frequentemente precisam de alguém para falar de coisas que os preocupam. A análise sincrónica confirma que as necessidades de apoio se diferenciam consoante a idade e patologia do filho. A análise diacrónica, antes e depois do GAE, confirma que as necessidades de apoio se alteram.
Quanto às redes de apoio, considerando a amostra global, os pais recorrem sempre ao cônjuge. A este juntam-se, nas necessidades práticas, os familiares, nas técnicas, os profissionais e, nas emocionais, os amigos. A análise sincrónica confirma que as redes de apoio se diferenciam consoante a idade e a patologia do filho. A análise diacrónica, evidencia, a nível global, a sua diversificação e consequente alívio do cônjuge e confirma que a participação nesta ação influenciou alterações nas redes de apoio social. A análise da competência parental percebida, antes do COR, indica uma avaliação global positiva nas competências de orientação e de controlo, negativa nas de resistência ao stress e mista nas emocionais. A autoavaliação da mudança na competência parental percebida, no final do COR, confirma que a mudança positiva foi influenciada pela participação nesta ação e que ela se diferencia com a idade e patologia do filho.
A análise do conteúdo das entrevistas presenciais destaca: nos GAE, a processos de partilha, de reflexão, de consciencialização e de aprendizagens; no COR, a processos de consciencialização e de aprendizagens. Os entrevistados apreciaram positivamente as Oficinas de Pais e destacam como factores distintivos o ser uma escola de pais de filhos com diagnósticos diversos, que partilham em grupo as suas preocupações, reflexões e experiências, e o foco da capacitação ser a pessoa-pai e não só só o pai de filho com deficiência. Os impactos no participante são avaliados positivamente e refletem-se em equilíbrio emocional, alteração de perspetiva da deficiência, identificação e partilha com outros pais e reposicionamento social e familiar.
ABSTRACT: The aim of this work is to trace a panoramic of the needs, parental abilities and support network of families with disabled sons, in Portugal, and to try to perceive the cognitive and emotional processes occurred in the Oficinas de Pais project and the impact in the participants of this family centered project. Three empirical studies were developed with the data collected from the 279 participants in the Oficinas de Pais project, between 2011 and 2012: In study 1, the data had been collected with questionnaires of family`s characterization, parent`s needs identification and the support network that they use, the questionnaires had been filled at the beginning and in the end of 1.º level of Oficinas de Pais (GAE); the statistical treatment had been done with inferential statistical techniques; in study 2, the data collected in the questionnaire on the perception of the parental abilities, filled by 54 parents at the beginning of 2.º level of Oficinas de Pais (COR), and in the questionnaire of auto-perception of the evolution of these abilities, filled in the end of COR; in study 3, analysis of the content of interviews, were made to 25 parents, with sight to understand the processes and the impacts occurred as well as the adequacy of the parent`s qualification. About the needs, regarding the global sample, parents rarely need help to explain their son`s problem and frequently need somebody to speak about things that worry them. The synchronic analysis confirms that the support needs differs consonant the age and pathology of the son. The diachronic analysis, before and after GAE, confirms that the support needs modifies. About the support network , regarding the global sample, the parents always appeal to the spouse. To this join, in the practical necessities, the family ones, in the techniques, the professionals and, in the emotional ones, the friends. The synchronic analysis confirms that the support network differs consonant the age and pathology of the son. The diachronic analysis evidences, in the global sample, its diversification and consequent relief of the spouse and confirms that the participation in this project influenced alterations in the support network. The analysis of the perceived parental ability, before the COR, indicates positive evaluation in the control and orientation abilities, negative in the ones of resistance to stress and mixed evaluation in the emotional ones. The auto-evaluation change in the perceived parental ability, in the end of the COR, confirms that the positive change was influenced by the participation in this action and that it differentiates with the age and pathology of the son. The analysis of the content of the interviews concluded: in the GAE, the processes of sharing, reflection, awareness and learning; in the COR, the processes of awareness and learning. The interviewed ones appreciated Oficinas de Pais positively and indicated as distinctive factors the fact that it`s a school of parents of children with diverse diagnostic, that share their concerns, reflections and experiences, and that the focus of the empowerment was the person and not only the person as the father of a disabled son. The impacts in the participants were evaluated positively and are reflected in the emotional balance, alteration of perspective of the deficiency, identification and sharing with other parents and social and familiar repositioning.
ABSTRACT: The aim of this work is to trace a panoramic of the needs, parental abilities and support network of families with disabled sons, in Portugal, and to try to perceive the cognitive and emotional processes occurred in the Oficinas de Pais project and the impact in the participants of this family centered project. Three empirical studies were developed with the data collected from the 279 participants in the Oficinas de Pais project, between 2011 and 2012: In study 1, the data had been collected with questionnaires of family`s characterization, parent`s needs identification and the support network that they use, the questionnaires had been filled at the beginning and in the end of 1.º level of Oficinas de Pais (GAE); the statistical treatment had been done with inferential statistical techniques; in study 2, the data collected in the questionnaire on the perception of the parental abilities, filled by 54 parents at the beginning of 2.º level of Oficinas de Pais (COR), and in the questionnaire of auto-perception of the evolution of these abilities, filled in the end of COR; in study 3, analysis of the content of interviews, were made to 25 parents, with sight to understand the processes and the impacts occurred as well as the adequacy of the parent`s qualification. About the needs, regarding the global sample, parents rarely need help to explain their son`s problem and frequently need somebody to speak about things that worry them. The synchronic analysis confirms that the support needs differs consonant the age and pathology of the son. The diachronic analysis, before and after GAE, confirms that the support needs modifies. About the support network , regarding the global sample, the parents always appeal to the spouse. To this join, in the practical necessities, the family ones, in the techniques, the professionals and, in the emotional ones, the friends. The synchronic analysis confirms that the support network differs consonant the age and pathology of the son. The diachronic analysis evidences, in the global sample, its diversification and consequent relief of the spouse and confirms that the participation in this project influenced alterations in the support network. The analysis of the perceived parental ability, before the COR, indicates positive evaluation in the control and orientation abilities, negative in the ones of resistance to stress and mixed evaluation in the emotional ones. The auto-evaluation change in the perceived parental ability, in the end of the COR, confirms that the positive change was influenced by the participation in this action and that it differentiates with the age and pathology of the son. The analysis of the content of the interviews concluded: in the GAE, the processes of sharing, reflection, awareness and learning; in the COR, the processes of awareness and learning. The interviewed ones appreciated Oficinas de Pais positively and indicated as distinctive factors the fact that it`s a school of parents of children with diverse diagnostic, that share their concerns, reflections and experiences, and that the focus of the empowerment was the person and not only the person as the father of a disabled son. The impacts in the participants were evaluated positively and are reflected in the emotional balance, alteration of perspective of the deficiency, identification and sharing with other parents and social and familiar repositioning.
Description
Tese de Doutoramento apresentada ao ISPA - Instituto Universitário
Keywords
Famílias Deficiência Capacitação Necessidades e redes de suporte Families Disability Empowerment Needs and support network
Citation
Publisher
ISPA - Instituto Universitário das Ciências Psicológicas, Sociais e da Vida